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Excerpt for our blog: November 29th, 2012Today we received our care package from FSMA (Families of SMA). They are so incredibly generous. There were toys that Logan can play with, a bath pillow to make bath time easier as his muscles weaken more, a bubble blower, a beautiful quilt made by the grandma of Nora (www.goodentree.com) who also has SMA. Several foundations were involved in donating. I told Brett one day when we are able, I would love to contribute to the care package somehow.

When we started on Logan’s journey, there two things we knew we wanted to do: Start a foundation of support for Southwest Missouri and contribute to Families of Spinal Muscular Atrophy care packages for newly diagnosed families. While searching for local support (and finding none sadly), we stumbled upon FSMA’s website. I contacted them the Monday after Thanksgiving and within 3 days, we had a carbed and care package. The care package opened up a whole new world for us and what we could do with Logan. It was very exciting!

This year, with the help of so many people, we were able to accomplish the second half of our dreams. 200 Usborne Touchy Feely Books were delivered to FSMA and placed in the Type I care packages! The Jacob Isaac Rappoport Foundation has been fully funding the Type I Care Package Program since 2009 and we are so honored to contribute to the cause.

Why Touchy Feely Books? Because they were Logan’s favorite past time. It was something the we could all do with him too. Lucas could not quite read yet, but the books were simple enough to read and then describe with his imagination. If Logan was starting to become cranky, we could pull out a “That’s Not My…” book and he would cheer up!

A huge thank you to everyone who made this possible. We could not have reached this goal alone. I am so excited that a small memory of Logan will be delivered in each box and hopefully will bring smiles to those going through this difficult journey.

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After every storm, there is a rainbow. Something beautiful and full of light has appeared in the midst of the darkness and clouds, providing a counterbalance of color, energy and hope. Ours just has some (very unexpected) pink mixed in ❤

So the news is out…and we are still adjusting to the news after many weeks. We had the CVS (chorionic villus sampling) done as early as we were allowed. It took almost a month to find out the results. Ready?!

Miss Baby Ruth is a carrier, but unaffected by SMA. ❤

She is also extremely unexpected. How unexpected? She managed to make her way through two methods of birth control…yeah… We did not plan for more children. We didn’t really want more children. After dealing with SMA, the risk was too big, too scary. The pain from Logan not being in our arms, too great.

After the initial news, I can honestly say I have never experienced so much anger in my life. I don’t think I can convey how much crying happened, how much questioning of why did this happen. “Does Logan think I’m replacing him? Will others think I am replacing him? I don’t want another baby, I just want my Logan back.”

We had the CVS done and it was the first time I actually saw the baby move. I took turns staring at the monitor, at this baby I had not idea how to accept and my phone’s background photo of Lucas and Logan smiling. In those moments, I came to terms that this was happening. Just like Logan’s SMA diagnosis, I couldn’t change this. The only thing I could do was change how I looked and dealt with the situation.

While I am not angry anymore, its still a mental struggle to accept that this is our new journey in life. Knowing we are having a healthy baby doesn’t erase the pain of my Logan baby not being in my arms. It does, however, give me hope that this rainbow baby will restore hope and positive energy; not only for myself, but also for Brett and Lucas.

The excitement is growing in our house. The influx of pink and purple have been welcomed with open arms, especially by Lucas. It is a fresh start. Not a do over, but definitely a sort of starting over. We have nothing for a girl and not even sure how we are going to handle a girl after two boys! It gives us even more fire to find a treatment/cure for SMA so when she grows up (just like Lucas), she will not have to worry about being a carrier.

Three things we do know: She is loved beyond all else, has two very protective big brothers and a beautiful guardian angel watching over her. Just like he is with all of us. 🙂

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Who is ready to Walk, Run or Roll?!?! Online registration is now open!!! https://www.ozarkraces.com/Register/?event=21546. More details are going to be released in the coming days/weeks. If you have any questions, feel free to post them and we will try to answer as soon as possible!

We are also so excited to tell you that the Logan Ruth SMA Foundation is in the works!!! In honor of Logan, we will spread SMA awareness (especially in the Ozarks), help support newly diagnosed families, and push forward in the fight for a cure!

Remember, if you register before July 14th, you will receive an awesome 1st Annual Logan Ruth 5k for SMA shirt! If you are unable to attend the 5k, but still want to donate, we will have a link posted soon for you to do so!

Thank you so much to everyone for the birthday wishes and all the green!!! I know Logan is smiling down on us ♥ And a huge thank you for your continued support in the fight for a cure!!! We can do this!!!

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Good Sunday Morning 🙂 If you are in the Springfield Area, be sure to tune into the Childrens Miracle Network Telethon on KY3. between 2 & 3pm. Logan’s story will be featured plus I will be there live to talk about Logan, CMN, and how they helped us.

And don’t forget to mark your calenders for Thursday June 6! We would like to designate the 6th of each month as Logan’s Day to wear green (his favorite color) and help spread SMA awareness. Please join us in wearing green this one day every month!!!

❤ Thank you all for your continued support, thoughts, positive vibes, and prayers during this difficult time. We are still working on big plans to honor our beautiful boy 🙂 Even though he is not with us physically, we do believe he is watching over us. ❤

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Monday morning was rough. Monday afternoon was really good! And then came Monday evening…

Logan was really fussy. We aren’t sure why. When we laid him down for bed, he fussed every few minutes. We knew it was going to be a long night ahead. He fussed almost every hour, all night. We resorted to morphine to try and help. Yeah…the sleep only lasted an hour. We tried everything, stopping his feed, burping him, turning on Little Einsteins, etc. Finally around 9:30am we burped him and what looked like stomach acid came up into the tube. After we got it out, he seemed to rest easier. We thought he was just recovering from the night before, until around 1pm.

We decided to wake him so he would sleep that night. However, he did ever really wake up. He was up for maybe 30 min before falling asleep on me. He didn’t wake up when I moved him to the couch. I hooked him up to his pulse ox so I could go make dinner around 4:30. Logan was still sleeping. He did wake up for about an hour around 5pm then went right back to sleep. Around 8pm he woke up crying. We rushed to administer morphine and reposition him. It took over 45 min to get him comfortable again. He gave back into sleep as I massaged his little foot and toes.

The next hour was the toughest Brett and I have experienced yet. We sat talking about everything in tears. We have done so much more to Logan than we originally planned. We did this together every step of the way and have no regrets. However, we talked about him turning 10 months on Monday and Mothers Day the Sunday after that. We discussed taking the oxygen off of him and starting a schedule of morphine and ativan. Brett has a hard time hearing Logan cry. Its always been that way though. He feels sleeping and comfortable is better than awake and crying. I feel that way too…kinda. Its hard. I never thought it would come to this. I mean, we knew it was somewhat inevitable without a treatment or cure, but I didn’t “think” this day would ever come.

We have talked with our hospice nurse and we are trying to find where something went wrong. He is now considered lethargic 😦 Kind of like last time. We think the Gabapentin may be the cause again. Only this time because of a build up in this body. We are fairly certain it runs through the kidneys and we have noticed the past week he has been dehydrated. We are also trying a new medicine to help with stomach metabolism in hopes it will create easier bowel movements and he will be able to take in more formula. I’m not sure if this will solve the problem, but we have to try.

Logan slept pretty much all day today. He was awake less than an hour total. He is right next to me as I type. He looks peacefully. His heart rate is high and we are suctioning out thin, sticky junk about once every two hours. But his color still looks pretty good and he looks as beautiful as ever. Even with his hair a messy, dirty mess 🙂

A rare Daddy Logan moment ❤

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Picking up where I left off…On Sunday Logan was only awake maybe a total of 4 hours. 2 of those was around noon when we did a garden stone with him. He was alert, more alert than Saturday, even though he wasn’t awake much. We talked with our doctors and decided maybe it was the medicine doing this. Especially since it was like he wanted to wake up but just couldn’t. So we took him off the Ativan (anti-anxiety) and lowered his dose of gabbapentin (nerve pain). His heartrate was also very high on Saturday, even while resting. It was still high Sunday as well but now we questioned the role of the medicine. We had a bit more hope compared to Saturday, but we were still very cautious.

Brett stayed home today and yesterday. Yesterday Logan slept until late in the morning but did much better. He was awake a lot more, but started to cry out in the evening. We did get some smiles though!!! We have started to use a pain med around the clock to try and keep him comfortable. Also trying to find a balance with the gabbapentin.

Logan decided to wake up at 1:45am this morning. I turned on Little Einsteins because he was wide awake. He smiled so big! ❤ It made my heart so happy!

He slept in until 10am again this morning. Its thrown off his feeds a little bit, but he is tolerating them better. He has been awake a couple of times and has given us some smiles. And!!! He let Brett hold him while I ate some lunch!!!!!!!!!!!!!!!! Now, that may not seem like much. But, a little over a week ago, Logan decided no one (and I mean absolutely no one) was allowed to hold or touch him except for me. He is still sleeping more than usual, but his heart rate looks a lot better.

He is still on oxygen and we have had to adjust it almost everyday, but for now he is still sitting at .5 liter. We have come to terms that he will probably not be coming off of it. However, as long as he is still comfortable (and hopefully happy) we are not bothered by it. In the midst of everything, I was in tears talking to our nurse saying how he didn’t seem happy and it was like he wasn’t here. She said we may have traded happy for content and comfortable, but that it was still good. He wasn’t in pain. That thought had never occurred to me. Logan is my happy baby…the thought of him not smiling never crossed my mind, but it happened. Its made me really think about everything.

This morning I got a beautiful smile though 🙂 Not as big as some, but he is still smiling.

On the part one post, a Facebook comment said it sounds like this is coming from a weary mom. That is absolutely right. I do sleep at a night when he does, but my body must not be getting a deep sleep because I am exhausted. We went from doing ok, to fearing we didn’t have 48 hours, to now being cautiously optimistic he is ok right now and learning to cherish every moment that much more. Brett goes back to work tomorrow as long as the rest of today and tonight goes well. I am nervous because I am so tired and Logan doesn’t want me to leave his side. I’ll have to be sure everything is within arms reach.

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Well, Thursday was eventful. All day. I posted about the morning scare we had. The rest of the day was ok until around 6pm. Our hospice nurse was coming over to help me figure out how to “unclog” Logan. He hasn’t had a bowel movement in 48 hours so we were wondering if that was contributing to everything. No joke, she walked through the door and Logan vomited through his nose. We spent the next 30 minutes suctioning him. We then found the cough assist wasn’t working. I’m not sure when that happened, but we had a new one delivered that evening. Thankfully, the suctioning helped him to stop coughing. We finally went to sleep about an hour later than usually.

He woke up at 3:30am with a slight fever. I called our hospice nurse to be sure I could give a dose of morphine with a dose of Tylenol. She confirmed I could and he seemed to rest really well until the morning.

Friday doesn’t stand out to me like the rest of the weekend. I remember being worried about him because he started sleeping more. His oxygen levels were all over the place. Late afternoon and we kept encouraging Lucas to sit and watch Little Einsteins with him. His cry had became very weak. I sent a text out in the evening to close friends and family saying he had declined on Thursday and hadn’t made a full recovery.

Saturday is a different story. A good friend stopped by that morning to see him while Brett and Lucas went to a friend’s birthday party. Logan slept over 12 hours. We woke him for a bit, but he went right back to sleep. It was rough after she left. It was like Logan wanted to wake up but just couldn’t. He finally woke around 1pm. He was awake for less than 30 min but I was able to leave the room so Brett could have some alone time with him. We all had this feel of dread that he wasn’t going to be here this time next weekend. He wasn’t happy Logan, he wasn’t really here with us when he was awake. It was so heartbreaking and I think I cried almost the entire day. I didn’t want to post anything in hopes we were wrong.

Saturday night, Logan and I slept on our couch. It has a chaise attachment I picked out for this purpose (thank you Ashley Furniture for have a crazy awesome sale with no interest for 5 years). We slept the entire night. And then he kept sleeping through the morning. 15 hours in total.